e-Ethics JANUARY 2003
Cultural Barriers to Organ Donation
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Organ donation seeks to fulfill
medicine's central goals of preserving
life, alleviating suffering, curing
disease, and restoring function. Yet
a great disparity in donation rates
across ethnic groups means that
these goals are often unmet.
Medical experiences of minority
community members—such as
African Americans, Asian Americans,
Hispanics, and American Indians—
are unique and difficult to generalize.
But there are common themes.
In 2002 the LifeLink Foundation
reported that common factors in
reluctance to donate included:
Lack of awareness
Religious perceptions
1
History of racism
Distrust of the medical
community
Fear of premature death.
2
Lack of continuous access to
quality health care increases minority
groups' vulnerability to a host of
health problems, some of which
damage organs and make transplants
necessary. Successful transplantation
is often more likely if the donor
is a member of the patient's racial or
ethnic group. But when minority
group members struggle to obtain
necessary medical care, have fewer
choices about where they receive
care, and cannot access care regularly,
they are less likely to have positive
care experiences that would support
a willingness to donate.
3
It is, howev-er,
possible to address the barriers to
donation while working to improve
the experience of medical care.
Lack of awareness. There is a
need for community education that
focuses on minority healthcare
needs in general, and in particular
on organ donation and transplantation.
Those who advocate donation
should attend to how members of
the community perceive and interpret
their message. They should be
well versed in the complexity of the
donation process and familiar with
the culture of prospective donors.
Partnering in education efforts with
respected local leadership, such as
clergy and community organizations,
can be helpful.
Religious perceptions. Beliefs
about the body are often formed
through one's religious tradition and
its practices, texts, and teachings. In
their texts or mores, many religious
traditions regard the body as intact,
in some form, after death. Organ
procurement may raise religious
concerns about the relationship of
physical and spiritual realms; implications
for the afterlife of donating
organs, either during this life or after
death; and moral imperatives
regarding the body as a gift from
God. In traditions that draw no clear
distinction between body and soul
(or body and mind), intentionally
giving away part of one's gift from
God may have significant ramifications.
Some cultural communities
also have beliefs about how specific
organs relate to the soul (the person's
essence), and those beliefs
may discourage donation. Almost
all traditions, however, support the
gift of an organ when it makes the
difference between life and death.
The wholeness of one's body after
death becomes less important than
saving another's life.
The importance of knowing the
patient's or family's beliefs regarding
donation cannot be overstated. Early
attention to the spirituality of patients
by members of the pastoral staff can
help lay the groundwork for sensitive
presentation of donation as an
option. The presence of a representative
of the spiritual care team, along
with a trusted spiritual or community
leader, can help a patient or family
confront underlying myths, conflicts,
and fears regarding donation.
History of racism. The ugly and
persistent vestiges of slavery, segregation,
and racism continue to provide
a disturbing context for the
delivery of health care to minorities.
Examples of discrimination in medical
treatment and research include
the Tuskegee Syphilis Trials; the federally
funded sterilization of women
of color; and the sterilization of low-income,
non-English speaking
Hispanic women who had signed
consent forms written in English.
Another example is a 1980s Norplant
study with Mohawk and Navajo
women. Five years after the study
was terminated because of safety
issues, it was found that some of the
women still had Norplant implants.
Such incidents produce anxiety and
lingering doubt about health
providers' motives.
4
Providers must
recognize this skepticism and address it
through serious efforts at reconciliation
with minorities.
5
Distrust of the medical community.
Healthcare providers need to consider
whether their behaviors may contribute
to lower donation rates among minorities.
When donation is an option, do providers
approach persons of different ethnic backgrounds
routinely—or only infrequently?
When they suggest the possibility of
donation, do they convey assurance that
they believe a commitment to donate
may well result? Or are they encumbered
by cultural stereotypes that assume a
reluctance to donate? In communicating
with families, are they sensitive to those
nuances of language and gesture that
could create apprehension, especially
among those who do not speak English or
who speak English as a second language?
If members of a cultural group have
suffered historically because of racism,
how will the healthcare community
rebuild trust when history documents that
medical personnel often did not promote
their best interests? Will providers explain
to minority groups and their members the
complicated distribution system so that a
prospective minority donor understands
who may receive the organs, and why?
Fear of premature death. Members
of minority communities are more likely
to believe that healthcare professionals
will not do enough to save their lives,
especially if they are identified as organ
donors. Such fears, and cultural barriers
that discourage discussion of death,
can hinder acceptance of a physician's
suggestion that aggressive treatment is
unwarranted.
6
Moreover, distrust can
make wary patients less likely to complete
advance directives that would limit
life-saving initiatives. A trusting physician-
patient/family relationship is critical
to creating a safe space in which difficult
decisions about care at the end of life
and, when appropriate, organ donation
can be openly discussed. Further, physicians
and other caregivers should take
time to answer the questions that organ
donation raises for families.
While Advocate's Mission, Values
and Philosophy commits us to respect
all persons—and thus to overcome ethnic
prejudices—we should make the
extra effort to appreciate each person's
cultural context. Respect can be
demanded; appreciation is freely given
from a space within us, a space that recognizes
the common ground of humanity
as sacred and inspires our best efforts
to improve medical care for all.
1. LifeLink Foundation, http://lifelinkfound.org/minority.html, 10/09/02. The source refers to
religious "misperceptions," a term that may
unintentionally suggest criticism of a community's
or individual's beliefs.
2. Ibid.
3. Etienne Juarez Phipps and Gala True,
"Women, Minorities and Organ Donation in
Transplantation," in The Ethics of Organ
Transplantation, ed. Wayne Shelton and John
Balint, Advances in Bioethics, vol. 7 (Oxford:
Elsevier Science, 2001), 318.
4. Ibid., 320.
5. Lee Ho, "Typical and Atypical Clinical Signs and
Symptoms of Myocardial Infarction and Delayed
Seeking of Professional Care among Blacks,"
American Journal of Critical Care 6 (1997): 7-13.
6. Phipps and True, "Women, Minorities and
Organ Donation in Transplantation," 329.
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